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Post Script 2020
THE SPAN OF LIFE by Robert Frost
“The old dog barks backwards without getting up.
“I can remember when he was a pup.”
Thanksgiving was the day 2020 ended for me.
I meant to write this blog by Christmas, but I needed more time to tell you this story. I needed more time to adjust to 2020, the year of incredible sorrow. This year has been like a giant tornado of chaos, hasn’t it? Just when you thought your life would calm a bit, another earthquake or fire – or death emerged. And each setback, sent me reeling into the unknown. I have never in my life been through a year like this.
However, out of the chaos is an opportunity to take back your life – or perhaps it is better to say that we can build life anew. That’s what Simon’s death has meant for me.
For me, 2020 ended the day my dog Simon died. It was Thanksgiving Day. At the time I was so traumatized that all I could feel was anguish, unbearable, gut-wrenching anguish. I felt cold and scared and totally alone. I had no one to comfort me. I had nowhere to hide from my feelings. I had no one to listen to my excuses for what I had done. I had never taken a life before. God, I was wracked with guilt and grief.
I had an impossible time believing that Simon would not get better, even when he stopped eating and my Vet told me all she could do was keep him comfortable until I was ready to make “the call” — the call to the Vet who euthanizes animals. She gave me literature to read on how to know “when it is time,” but I ignored it. She reminded me that Simon couldn’t make this decision on his own; that it was up to me to do “the right thing.” She was kind but firm. “No,” there was nothing else left to help him, she confirmed.
When Simon refused his meds and supplements — and he hadn’t been eating in days – I realized it “was time.” I looked at his sweet face, patiently sitting with me as I tried to get him to eat. Finally, I caved. “OK, Simon. Go ahead, honey, and go back to bed. I guess this is it, isn’t it?” I said with resignation. Simon walked slowly over to his bed and found a comfortable spot for his stiff and weary body. He sank into his bed because he couldn’t hold himself up anymore.
I started to walk away from him but I turned to see him eyeing me with that look of anticipation he always had when he needed to know if I was OK with his decision. It seemed to me that he was saying, “I’m done. I’m tired. I don’t want to go through anymore. Just let me sleep.”
I smiled back at him and said, “It’s OK Simon. I love you.” He looked comforted by my words.
I walked back to the kitchen with Simon’s uneaten food and meds. I rested my hands on the sink for a moment to steady myself. Silently I dumped the contents of the bowls into the trash. I knew I wouldn’t try anymore. I felt numb.
I left the kitchen and walked into the living room, where I found Neo, my 16-year-old Russian Blue cat. Neo was such a lover. He greeted me at the door when I came home each day. He especially liked to snuggle under the covers with me at night. He was always first in line for cat treats. He loved sunning himself on the upper deck. And he always had a childlike curiosity, even on his last day of life. I adored my darling little Neo.
Like Simon, Neo also endured a plethora of meds and supplements that I popped into his mouth several times a day; although he didn’t mind home visits from Dr. Rita who gave him chiropractic and acupuncture. He had a royal diet of raw cat food. His favorite was rabbit. But age and disease had ravaged his body too. He only weighed in at about four pounds by Thanksgiving, down from his usual 13 pounds.
After cuddling Neo for a moment, I went to my home office and texted the only person I knew on Whidbey Island (Jodi) to ask for a local Vet to help me. I had just arrived on the island the day before, with all my worldly belongings and my four animals. I sold my Portland home and wanted to start fresh on this lovely island in Puget Sound. I rented a little beach house, thinking it would make a good landing spot until I could find my next home. But I also secretly hoped that leaving Portland (the scene of so much heartache for me) would somehow restore Simon and Neo to better health. I didn’t want a miracle. I just wanted a beautiful and calm environment for all of us to heal.
The terror behind PTSD.
Without going into more detail, I want you to know that Simon and Neo passed graciously and peacefully. But it took me many more days to realize the significance of their lives and their deaths. I fought the pain. I blamed myself. I had a constant headache and my thinking was fogged. Eventually, though I decided to honor their passing and face my worst fear.
As the fog lifted, I felt the terror for the first time. I couldn’t stay numb forever. I couldn’t pretend that I was simply afraid. No, I was terrified. Once I couldn’t deny any longer that I was not in control, that I had no answers, that I couldn’t bring Simon and Neo back, nor could I have prevented their ultimate deaths – and that I had no idea how I would carry on – I felt the terror with all of its force. It was shocking.
Stay with me for a momentary sidebar, because this is important for any of you who have PTSD (Post Traumatic Stress Disorder). PTSD is an odd diagnosis since it is a rare disorder that is considered a normal reaction to abnormal events. In other words, PTSD is what normal, healthy people do/feel when faced with a life-threatening event, or they fear for the safety of loved ones.
It is the terror that survivors fight to suppress with denial, psychic numbing, self-recrimination, and rescuing others from their worst inclinations. To feel the terror means that you know for a fact that you are helpless to correct the losses and devastation rolling your way (whether it be the pandemic or the deaths of beloved animals). Once I accepted that what I was feeling was terror, I could trace it to the traumas in my life. Simon’s death triggered those traumatic feelings, causing a cascade of retraumatization (both remembering the past traumas and feeling the traumatic feelings all over again — as if it is happening now). You see, traumas can’t be resolved neatly. They can only be accepted. And that means the feeling of terror surfaces over and over again with each loss. PTSD is not curable, but with spiritual awakening, survivors can manage their retraumatization a bit better.
“For survivors of trauma, one thing that keeps us going is to believe that we can learn from our mistakes and do better next time. We take on huge responsibilities for the lives of others in our mistaken belief that all we have to do is try harder, do one more thing, take on the impossible. In other words, I felt guilty for letting Simon go because I clung to the irrational belief that I could save him. Better to believe that than to feel the terror of past traumas, or so I thought.
Out of Limbo and into Life.
A couple of weeks after Simon’s death, I awoke with a headache — just a headache and not uncommon for me, when I am going through such a powerful transformation. I got out of bed and took a couple of Excedrin, which quickly dispatched the headache, but also left me wide awake. So, I opened the New York Times on my tablet, and read the first column that got my attention, ‘Numb’ and ‘Heartbroken,’ the U.S. Confronts Record Virus Deaths (December 10, 2020).
Obviously, I could resonate with the column. I too felt numb and heartbroken. I have many losses to grieve and yet I am grieving again. But I also recognized in this news column that I am not alone. The authors stressed this for their readers. They wrote about how the pandemic has changed our focus in life. Yes, it is important to protect oneself from the exigencies of the pandemic, but it is also important to love and forgive and reach out to those who need to know they are not alone.
The following quote from the column is particularly poignant because it brought into my awareness not just the fragility of the human experience – but the power and majesty too.
“The new daily death record – 3,055 individuals who blew out birthday candles, made mistakes, laughed and cried before succumbing to the virus – far surpassed the spring peak of 2,752 deaths on April 15 and amounted to a stunning embodiment of the pandemic’s toll. In a single day, the country, numbed and divided, lost more Americans to the coronavirus than were killed in the Sept. 11th terror attacks or the attack on Pearl Harbor.”
My mistakes and my trauma pale in comparison to the suffering going on in the world during this pandemic. Nevertheless, I am grateful for my old dog, who taught me that the only thing I need is love. What Simon’s death reminded me is that it’s the mistakes that make us human – and forgiving ourselves and others those mistakes. God made us this way, not as a punishment, but as a way to help us learn lessons and grow from them. If we didn’t have free will (to make those mistakes) we would never understand the importance of loving each other.
As these truths washed over me, I also felt marvelously freed. I didn’t feel afraid anymore. I didn’t feel guilty either. Yes, I want one more walk with Simon and one more cuddle with Neo. Yes, I miss other loved ones every day. But I am not to blame. I am healing and I am on a mission to help others heal. This is what Simon’s death taught me.
Dear sweet Simon. Even in death, he protects me – and his angelic love guides me.
P.S. 2020.
I am certain that you all have stories like mine and I would love to hear from you. Was there a pivotal point in 2020 when you had enough? When you fell to your knees and thought you couldn’t go on? When did you regain the courage to take back your life? Or if you are still in the fog let me know how I can help you. You don’t have to go it alone. Not anymore.
Living with a “Covid Brain”
There’s a new diagnosis floating around. It’s colloquially referred to as “Covid Brain.” After this many months into the Corona Virus Pandemic, many of us are experiencing fear, fatigue, depression, and confusion. Our normal routines are up-ended. Without our normal social interactions and daily activities, we are just not ourselves anymore. We have been social distancing, quarantining with only a few people (and often with only one person), and we have been waiting — waiting fretfully for the crisis to pass.
But the crisis is not passing. This is discouraging. Plus, we humans were not designed for extended periods of crisis. We eventually break down under this pressure. We are wired for each other. We not only need the joy of companions, but we take solace from others in our situation. How do we do that now? When you can’t stop to talk to your neighbor or let your dog run up to a group of children at the park, and where are those children anyway?
As for me, my life has been in crisis mode off and on for years, simply because I have lived nearly my entire life with Autists and their multiple emotional/psychological/physical demands. When the pandemic took hold, I barely noticed. I was used to the isolation, as so many of us are who live with “Aspies.” Plus, Wonder Woman is my middle name. However, seven months in, I hit a wall.
I didn’t crash and burn. Not to worry. I am still here, alive and well and sitting in front of my computer, writing this message to all of you. What happened in September though, is that the city I live in was inundated with Pacific Coast forest fire smoke. Not only had the pandemic isolated me, but I was fighting for my life and the lives of my loved ones, because our air quality was at a hazardous level. For two weeks, I fought the invasion of the smoke, not daring to walk outside, swapping out air filters in my AC unit, eating what I had in the house, not daring to walk my dog for fear he would collapse.
And then it happened. I lost track of time. In fact, I lost a whole week. I have no memory of the days from September 21-28. I mean, I know I did things on those days. I had numerous video appointments during that week. But I was convinced that it was September 21st, a week later when it was September 28th. This is no little blip. It’s Covid Brain.
If you have little signs like this, it is no small thing. Please don’t ignore Covid Brain. Are you irritable, have headaches, feeling dizzy, trouble breathing, stomach/GI distress, chest pain, chills — or in my case, a bitty foggy-headed? Then it’s time to seek help. Seek a therapist, get a good physical, and come to our group to talk.
Disaster researchers tell us that we have hit the “Discouragement Phase” of the Corona Virus Pandemic. At first, we thought it would pass. Some of us stepped it up and volunteered at social service organizations, as if this thing were short-lived. But now we have entered the “Discouragement Phase,” since there is no end in sight. Not only do we have to live with Pandemic protocols for a long time — our world has changed, and there is no going back.
Some people are starting to accept these changes and refer to “The Before Times,” or “BC” (Before Covid). The message is clear. We have gone past the point of no return, and that old life is not coming back. But there is something after discouragement. It’s called the “Reconstruction Phase,” where we rebuild our lives.
Those of us who have successfully traversed severe trauma know how to reconstruct our lives. We are in better shape than many to face the losses imposed by the Pandemic. We don’t have to stay discouraged, or wish for “The Before Times,” but we can use all of our collective creativity to find a new way forward — by being our loving, creative, and authentic selves.
I think of my Covid Brain incident as a little reminder that I have a huge light to shine in the world, and so do you. No sense staying stuck in “Discouragement,” waiting for “The Before Times” to return. Instead of racking up symptoms, it’s time to show your resilience and take on the adventure of your new life where “No one has gone before.”
In Washington, there is a phone number to call to get information about the latest on Covid 19 (Washington Listens: 1.833.681.0211) and there might be one in your state too.
ADDitude Magazine has a survey about the ways uncertainty has affected you. I encourage you to fill out this survey if you are an adult with ADHD, and/or your child(ren) have ADHD. They’ll share the results in the coming weeks.
I hope you can join me in our little community of fearless souls in our private MeetUp group, or if you need 1-1 help, please reach out to book an appointment with me and check my Contact page.
The Empathy Gap in ASD/NT Relationships
I have spent a lot of time in my books and blogs and seminars defining empathy. One of my most popular blog posts is Empathy: “Asperger’s” Style. Each time, I get better at it. That is the nature of empathy, actually. It is a process that grows stronger over time, as it is used and refined. Think about it, without empathy all you have is words (i.e. context and conversation), but no meaning to connect one person to another.
On the other hand, the ASD child may also try to share their cupcake and then be humiliated when they are scolded by the Duty Aide. The ASD child is humiliated not because they shared the cupcake, but because they didn’t know the rule about sharing (or they got caught). It is kind to share the cupcake. It is empathy to do so in spite of the rule.
Subtle, isn’t it? Empathy is like that. It is the ability to know what you are feeling and thinking (such as, “I can’t wait to eat this yummy cupcake”) — at the same time that you see another child without a cupcake, and you wonder what they are thinking (such as, “I sure would like a bite of her cupcake”). The child acts on this wondering by offering some cupcake to the other child. If the child looks interested, the first child breaks off a piece of cupcake, and hands it to the other child. They smile at each other, as they wipe cupcake crumbs off their lips. Then they both wink at each other with an understanding that they broke a rule — and started a friendship.
However, the ASD child learns another lesson. The ASD child may want the cupcake. They may want to be polite and accept the offering. They may even want the friendship of the other child. However, breaking the rule is anathema to the ASD child. When they are caught sharing the cupcake by the Duty Aide, they may blame the other child by saying something like “she made me do it.” From this encounter, the ASD child learns that rules are more important than friendships. Sadly, she cut off a budding relationship.
If simple mistakes like this are made by six-year-olds, is it any wonder that the empathy gap widens as we grow up? By the time we are adults and engaged in life with a marital partner, and perhaps children, NTs and “Aspies” are light years apart in their abilities to connect.
As I have described many times in my books and blogs, empathy is more than emotion, or feelings, or sensitivity, or even understanding another person’s emotions, thoughts and feelings. True Empathy requires integrating a complex array of social and interpersonal information, and in a split second be able to talk about it with another. This is what is meant by “connecting,” or being “in tune,” or “in sync,” or “vibrating,” or “resonating” with another person (or life form).
My goal with this blog post and my MeetUp group, Asperger Syndrome: Partners & Family of Adults with ASD, is to enlighten and to search for the elusive communication, so that even without empathy, “Aspies” and NTs can connect. If you are not a member of my group, please join and if you are a member, please join our events and our discussions. You are not alone.
How Not to Communicate with your ASD Partner
Connecting with your ASD loved one requires so much more than you realize. You will be frustrated if you use these standard approaches, just as these folks below. Can you tell which comments came from the “Aspie” and which the NT?
- “I don’t get small talk. It seems like a waste of time to me.” From a puzzled “Aspie.”
- “I am very direct. I mean, what’s the point of wandering around and not getting to the point? I like to get right down to business and explain the little things later. Like the time I was trying to explain to my partner that the way he talks to me is hurtful.” From a well-intended, but indirect NT.
- “My partner likes small talk. I guess it makes her happy to gab and gossip. So, I politely wait until she is finished.” From an ill-informed “Aspie.” I wrote a blog post entitled Why is Small Talk the Bane of “Aspies”? to talk about this specific topic.
- “You know, I have needs too. So, I am direct about them. It’s just that he doesn’t think my needs are important.” From an NT who is drawing an incorrect conclusion.
- “My wife accuses me of not listening, but I am an excellent listener. I hear every word she says. It’s just that she wanders around so much, that I lose track of the point.” From an “Aspie” who thinks listening is documenting word flow. Understanding Context Blindness in our ASD partners is important.
- “Why doesn’t he listen to me when I tell him how I feel? He’s such a robot!” From an NT who wants an intuitive understanding of her inner process.
- “She thinks I have no feelings and yells at me over nothing.” From an “Aspie” who recognizes the anger but has no idea what to do with it.
- “I don’t deserve to be treated this way by my own spouse!” Both “Aspie” and NT feel this way, and so the tragedy unfolds.
I am sure that most of these comments sound very familiar to you. You’ve been there; done that. Tired of the same old, same old? Confused, hurt, angry? There’s a good reason. If you are NT you have been approaching your partner expecting Empathy, using Context Sensitivity as your matrix, and waiting for your partner to recognize You, the You who is talking.
On the other hand, if you are “Aspie” your distress is justified because you are being asked to operate as an NT, but without the skill. Furthermore, you’d just like to be taken at your word, instead of all of the innuendo thrown your way.
Relationships are hard. Throw out all empathy from one of the partners and you get a whole new mix. Because people on the spectrum lack empathy, they inadvertently cause others to feel ignored, unappreciated and unloved. Many cope by coming up with an explanation of why life has turned out the way it has. But these explanations change nothing.
Everything you talk about should be about what you’re feeling or hearing or seeing or smelling right now. Don’t analyze. Don’t blame others or yourself. Don’t judge either. No complaining. No explaining.
If you are part of my MeetUp group, Asperger Syndrome: Partners & Family of Adults with ASD, let’s dive into these communication problems and find solutions. In this post, I’ve been giving examples of daily talk with your ASD spouse and why using an empathic approach won’t work. Join me for video conferences and join our small group to discuss these serious issues. If you want a 1-1 session with me, I also offer video conferences and teleconferences every week to discuss and make a plan on how to improve and move on with your life. Check my Contact page to schedule an appointment.
Autism as Context Blindness
What is Context Blindness?
Dr. Peter Vermeulen discusses context blindness is his book, Autism as Context Blindness. Context blindness hinders an individual from being sensitive and aware of the feelings of others. You can also read an older post I wrote about “Mind Blindness and the Disconnect in Asperger Syndrome Relationships.”
How does Context Blindness affect your life?
For most people, context is a part of life. Everything is relative and depends on the context. For someone with “Asperger’s,” life is absolute – especially regarding social interaction. Neurotypicals still have to find ways to cope with the context blindness and resultant cluelessness of their ASD loved ones, but I do think the theory of Context Blindness helps in this regard. Understanding better how your partner thinks is tremendously helpful.
What can you do?
With understanding comes the ability to drop the NT’s defensiveness and guilt and myriad other co-dependent behaviors. It’s easier to detach from the anger, hurt, and blame, when you realize that it is not your fault. I wrote two blogs that can help you moving forward: The Art of Detachment – Essential for Asperger Relationships and How to Be the Real You.
Context Blindness is one of the many themes we discuss through video conferences and free teleconferences (soon podcasts too) in our MeetUp group, “Asperger Syndrome: Partners & Family of Adults with ASD.” Our next video conference is titled “Autism as Context Blindness,” and I’ll be giving this talk on June 18th and June 23rd. This group has been created from a need of our community to gather in a safe and private place to discuss our daily difficulties and problems. If you are a partner or have a loved one suffering from “Asperger Syndrome,” I invite you to join our community.
Why Does My ASD Spouse Mimic Me and Others
I’ve written quite a bit about the science behind “Asperger” behavior or why our loved ones on the spectrum react the way they do. Next week, I’ll be talking about this subject, and I’ll also be giving my second, and final video conference on the topic of “Why does my “Aspie” mimic me and others?”
Social interaction requires grace and skill. For NTs, this is something we acquire over time as a result of multiple social exchanges. We make connections. We compare ourselves to others. For our ASD loved ones, this process is very different. Mimicking is good enough because they have no idea there is anything behind our social behaviors. Their patterns of communication are different.
The world is full of patterns, and people on the spectrum also have patterns of communication. Once we understand these patterns, we can understand our “Aspie” better, so our relationships can improve. Once you know their patterns, you have a better chance of connecting in their world.
It took me forever to break the code because I was trying to understand them from an NT (neurotypical or non-autism spectrum) perspective. Once I let go of that notion, I could more easily see the patterns they use to make sense of the world.
Many of our loved ones on the spectrum chose us because we are very socially adept, or we are kind and compassionate, or another quality that makes it easier for them to mimic us, or come to rely on us to carry the social situation.
During my video conference, next week, I’ll be talking more about what this looks like and how to take back your right to your own self-expression. It is hard to understand that we are enough, and our feelings are valid. The very act of making choices, we prove how amazing we are. The freedom to choose is immensely important to our self-esteem. My blog, “Why Self-Compassion Is Better than Self-Confidence,” might be a useful read for you.
If you want to know more about these patterns and how to take back your life, I encourage you to join our MeetUp community, “Asperger Syndrome: Partners & Family of Adults with ASD.” It’s a space for partners, family, and friends of people on the spectrum from around the world. This is a community that understands and can empathize with your daily struggles. You will also have access to weekly video conferences to help you navigate through your highs and lows and reclaim your life. I hope to see you there.
